The short answer is, there is no such thing as the best way to manage type 1 diabetes. One person’s journey is not going to be the same as yours.
Unfortunately, there is not a “one size fits all” approach when it comes to managing diabetes. Which in my limited experience can be widely misunderstood. When you are forced onto this roller coaster, you come to realise all to soon that there is a lot of:
- generic stigmatisation
- a general lack of understanding
Particularly around the realities of caring for and/or managing externally a function that our bodies accomplish so seamlessly.
Now I hold my hands up and admit that would totally have been me, had our daughter not been diagnosed back in 2020. I had never really even heard of type 1 diabetes. Therefore, I am under no disillusionment that unless you are a carer for, or living with diabetes, you really aren’t ever going to grasp every nuance of this side of our reality.
However, If you have relatives or friends or would just like to learn more then this post may be for you. It may just help to give a little more of an insight into the world of diabetes and perhaps even
I hope that by reading this blog it will offer a perspective on the individuality of this condition. It delves into some of the judgements and comparisons experienced and suggestions of ways to move conversations forward.
But fundamentally it is critical to acknowledge that, how we manage type 1 diabetes in our day to day lives is as unique as we are.
What is it like to live with type 1 diabetes?
Living with any form of diabetes is hard. There are many additional physical aspects, such as injections, pump changes, blood tests, blood sugar monitoring, carb counting to name a few. But more than the practicalities, it can also be emotionally draining. There are so many extra considerations you have to be mindful of. In fact, research from Stanford University in 2014 found that people living with type 1 diabetes make an extra 180 health-related decisions a day, compared to someone without diabetes. That’s an incredible amount of headspace to be given in any one day. It approximately equates to 1 decision every 5 minutes you are awake, which I am sure will have significantly increased with the development of diabetes management technology!
There are so many factors to consider when managing type 1 on a daily basis, in fact, there are over 40 things that can affect blood glucose levels from; food consumed, to activity, illness, hormones, stress and even the weather outside! Unsurprisingly this makes management tricky. Some days it’s a bit like spinning a random choice spinning wheel and just hoping for the best.
However, the key measures that have to be monitored regularly throughout the day are:
- Blood Glucose Levels
- Insulin Levels
- Carbohydrate Counting
If you would like further information on what these measures actually mean, they are explained in more detail in the post; What is type 1 diabetes?.
But whilst the measures we monitor may be the same, the methods we use, how actively we scrutinise and treat our diabetes is completely individual.
What factors influence our choices in how to manage type 1 diabetes?
When we are thrust into this world of diabetes and start the long journey of adjustments, our thoughts can turn to the best ways of moving forward. However, this will be greatly influenced by many external factors such as:
- Where we live in the world
- The access we have to health services
- Our fianacial provision
- The social environment we live in
- Our age
- For children, parenting styles and beliefs
In the UK we are incredibly lucky to have an amazing free health service that offers access to different treatment options. Nevertheless, that privilege to access is not always equal. Our age, where we are in the country and the boxes we tick in order to qualify for certain treatments all play a part again in determining our approaches.
However, the most critical factor in my opinion, that impacts our decision making and management preferences is our personal choice. These are of course heavily influenced by some of the external factors listed above. We all have varying cultural and social backdrops, which influence how actively diabetes management will happen. Some of us will embrace every aspect. Proactively responding to alarms and frequent monitoring via technology available now. Or perhaps some will decide to use only part of the technology available.
Whilst for others this may not be the path for them at all. Perhaps they will choose to learn to respond without any technology. They may limit their daily monitoring and opt to follow an insulin injection regime. But, whatever the approach we decide upon, we make them in the knowledge that alongside the external influences, it is what suits us or our child best at this point in time.
How to naviagtae diabetes management comparison
Today, we sadly live in a competitive culture of comparison. This can be clearly identifiable in the language we use and how we communicate with others. But also I personally find more distressing is how easily accessible this is on social media platforms.
This comparison culture can leave us open to setting unattainable management goals, feeling inadequate, and even frustrated or disappointed when our graph or HbA1c isn’t as in range as someone else’s. It compounds the fear of not being good enough, but also I have found that it can make me incredibly defensive about the choices we have made around diabetes management.
The choices we have made
For us as a family we have fully embraced all that technology can offer us. Now, this approach certainly comes with its drawbacks of, constant monitoring and living life by alarms. It can be frustrating, annoying and exhausting, which all contribute to periods of burnout more easily. However, for us, it works. It has allowed us this visibility in how her body responds to certain foods, illnesses, exercise, hormones and even the weather so that we can be responsive to her ever-changing insulin needs.
Nevertheless, I fully accept that this is not that approach for all. Although again I will absolutely hold my hands up at this point and admit it has taken me some time to get to this place. I definitely had periods of confusion with those that shied away from technology. But through connecting with others in the community, I continue to learn about other people’s experiences. Rather than enter those conversations with a very one-sided opinion, I try to be open to understanding and learning from them.
Something that has helped me with this is listening and reading the work of a truly inspirational human being, Björn Natthiko Lindebladman. It was through his work I was introduced to the mantra ” I might be wrong”. He taught that by entering our discussions with the idea that “I may be wrong”, opens us up to greater possibilities of learning, empathy and understanding. It allows us the space to leave our judgements and perceived ideas firmly at the door.
So, whilst we may feel we are right and our approach is definitely the best way of managing type 1 diabetes, perhaps we are wrong!
But really, how hard is it to manage type 1 diabetes?
This is a judgement that often rears its ugly head in conversations around diabetes management. We are all subject to unconscious bias. This is certainly true when it comes to a diabetes diagnosis and management choices.
We may have a general perceived idea of what life is like caring for or living with type 1 diabetes. These notions come from the stories of others, social media, articles in the press or Margaret down the road who had a second cousin who lived with type 1 diabetes for 50 years (and you would never know!). These experiences build pictures in our heads of the reality of what it must be like for everyone. But that is far from the case.
We enter discussions carrying these perceived ideas and when we ask our questions around how do you manage type 1 diabetes? they can often sway your reactions to the responses we give to their answers. So for example, I am often asked How my daughter is getting on, which is great. But I just never know how to succinctly, in 2 or 3 sentences (before the attention invariably disappears), explain it all. I am often unable to quantify the demands or realities. I can often end up feeling like a complaining child who is fed up with her lot!
So inevitably, the response to this is of anecdotes or the other person’s perception of the reality we experience. This inability to clearly talk about diabetes leads me down the path of perceived judgements and frustration. It leaves me doubting our reality, our choices and asking, “am I just making a big deal out of this?”. This in turn makes me defensive. Which is not a productive approach and does very little in helping to dispel the stigmas and misinformation out there.
How do we move forward?
If you have got to this point in this post, firstly well done. Secondly, it’s time for me to recognise that these perceived judgements, firmly sits with me. I can not change other people’s past experiences and stories of living with diabetes. But what I can do is learn to ignore the judgements in my head. I need to challenge my own perceptions to be open to learning improving how I respond.
But perhaps also the next time you have a conversation regarding diabetes management maybe you could:
- Recognise that diabetes management is not a one size fits all kind of treatment
- Acknowledge the external factors that influence our access and choices
- Leave your perceived notions of diabetes behind
- Enter the discussion with the idea “that I may be wrong”
Comparison culture does not have a place in diabetes management. By moving away from this, then we are more open to what others have to share. Yes, there is always someone that is worse off than you, yes there is someone who seems to have all the answers and is showing us that they have the perfect way of managing this tricky and intricate function on a day to day basis. But the reality is probably quite different.
How we manage our day to day lives with diabetes is as unique as we are.